My name is Gwen, Kansas wife of Scott, mom to Cal (age 18), Claire (age 15), Lola (age 10) & two perverted whippets named Romeo & Cash (affectionately known as Peppermint Patty & Capricorn! ?). I married my high school sweetheart in the late 1900’s after dating 8 years — true soulmates! We have a family business Infinity Art Glass, it was started in 1999 and named after us two lovebirds who used to sign all our love notes to each other “Love ∞”! We are huge dorks, if I am being perfectly honest! We laugh all the time and I swear to you, that is quite possibly the key to a happy marriage — humor. Scott is definitely my bestest friend in all the land. ? You can follow our journey via The Hartley Hooligans, The Hartley Hooligans FB, Gwennieh Insta.
Welcome beautiful Gwen, Claire & Lola
Natalie: How did your special needs journey begin? (What was going through your heart & mind during this time)
Gwen: My special needs journey began on July 25, 2001 when our daughter Claire entered this world. Prior to her birth, we had a typical son 2.5 years prior, so we had no reason to be concerned about her health or well-being. We had no family history of any diseases or conditions that might affect her life. We had a “normal” sonogram with Claire at 19 weeks gestation. Her birth was uneventful, though it took a few days to get my labor going.
I will never forget our doctor holding her up and seeing her little head and her arms tremoring… my first words were, “Oh my God! You forget how tiny their little heads are!” I remember seeing her arms shaking & I just assumed it was a normal baby behavior I had forgotten about. It was such a weird moment, as the thought never crossed my mind that anything was wrong, but yet there was so much commotion in the room. I remember lots of people were rushing around and whispering things and it was very quiet, yet so many people kept coming into the room.
I was giving birth at a different location — a Birthcare Center this time — so I just assumed that was standard protocol. I remember several minutes after Claire was born having a conversation with my OB about her. He said, “Have you chosen a name for your baby girl?” I said, “Claire. I have known since I was 13 years old that I would have a daughter named Claire.” He said, “That is a beautiful name. I just want you to know that there may be some problems with Claire…” I replied, “Well, we’ll fix them!” He said, “I’m not sure you can…” He then explained that we’d be in the hospital for awhile & that she’d be undergoing testing to determine what was wrong with her brain. He suspected it could be a genetic condition. I remember he left us alone then, and what followed that conversation was something I almost wish I could forget.
I am glad that 15+ years have passed since that day, and I am SO GRATEFUL that so many wonderful things have transpired since then, and I cannot tell you how HAPPY I am that my memories of that day are now fuzzy because it was definitely one of the lowest days of my life. I remember my husband becoming physically ill — to the point that he felt nauseous and withdrew and his body felt flu-like symptoms. I remember how hard I cried that day… how I didn’t think it was possible to scream that gutturally and to cry from such deep places within my soul.
I remember just wanting to take it all away from her. I remember being scared, sad, disappointed and worried for her future (and selfishly, my own). I remember thinking I wasn’t strong enough to deal with this. I remember someone saying adoption was an option and I said, “ARE YOU FUCKING KIDDING ME????? THIS IS MY BABY! I HAVE WANTED HER FOR YEARS!!!!!!!!! I JUST WANT TO TAKE ALL HER PROBLEMS AWAY!!!!!!!!!” I remember having the best nurse on the planet sit with me and hold me and told me to scream and cry and let everything out because that’s how the healing would begin. I sit here crying as I type this, a little bewildered that the emotions are still RIGHT AT THE SURFACE 15+ years later. How can that be? How can intense joy/the deepest love I have ever known be so intermixed with such fear/sadness STILL?
I think that’s what we experience in this special needs life — those far extremes that shake us to our core and CHANGE OUR VERY BEINGS at a soul level. They bring something out of us we didn’t know we had. They stir within us emotions we cannot tuck away or not deal with — they force us to tackle them head-on and process it & work through them OFTEN. I am not sure a day will ever come where I won’t have tears just under the surface for my girls. And I am not 100% sure those tears are laced with only sadness… because sadness for them isn’t a feeling I feel very often. And that may shock you, but I think it’s more FEAR. Fear for the unknown, fear that I could lose them, fear of how life would ever be without them, fear of who I would be if not their mother… I pray it is many, MANY years from now until I find that all out.
Natalie: What is the name of the condition that your girls have ? Can you share with us a little more about it? What are your worries and also hopes & wishes for your beautiful girls?
Gwen: Claire & Lola were diagnosed with microcephaly early on. That has always been their primary diagnosis. Other diagnoses such as spastic quadriplegia cerebral palsy, epilepsy, cortical visual impairment, dwarfism, etc. were added along the way. It was the Fall of 2016 that Whole Exome Sequencing finally gave us their official diagnosis of Asparagine Synthetase Deficiency (affecting the ASNS gene). Both my husband & I are carriers for this neurometabolic disorder, it is a recessive gene, and we have a 25% chance of this affecting each pregnancy we have.
It is simply chance it affected only our daughters. Not much is known about it, and I have only met 2 other little girls who have this (online), though we know there are maybe 20 found worldwide with this condition so far. It appears to be a spectrum disorder, so children can be affected more mildly or more profoundly, depending on their specific mutation. Many of those diagnosed have already passed away. It may be degenerative. I think that is my biggest concern… seeing the girls regress with this. We believe that may not happen with every case, so hopefully our girls will continue to progress at their own speeds and defy odds as they so clearly already have.
There is no cure. Our primary goal has always been to optimize the hell out of their lives. That is our priority and will always be our priority with them. I used to want them to walk so badly. I dreamt of it and prayed for it and offered to give years off my own life so they could walk. I no longer wish for that. My wish is for our girls to be happy and always know how very loved they are. I want to continue to enrich their lives and include them in all we do and do things that expand their minds and give them a voice. I want to continue to work on physical and social development. I am so grateful to our team who so clearly shares our goal of optimizing their lives. We are so lucky!
Natalie: I know siblings can be a wonderful source of inspiration and connection. What have been some special moments between them with your eldest son Cal?
Gwen: Our son, Cal, plays basketball and his team includes the girls in their starting line-ups at every home game. They come over and give fist bumps to the girls after being introduced. They are local celebrities in our little town! He has always had a special place in his heart for his sisters. He looks past all that is “wrong” & sees them for who they are. He was so doting over them when they were little. He has always been THE BEST big brother I could have ever hoped for. Even to this day when Lola is super fussy and cranky, he can often soothe her and calm her down when Scott and I cannot. It’s precious!
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges, how did you fill your cup during those times? Are there any self care practices that helped you on your journey?
Gwen: I am fortunate to have incredibly awesome babysitters and nurses who give me much needed breaks! I have a few babysitters who come help during the day (they are literally stand-in Mommies!) and I have 2 nurses who come help at night. They have SAVED ME. I am not exaggerating here! That allows me time to go help at our family glassblowing business, run errands, squeeze in appointments, grocery shop, go to one of Cal’s games, etc. I also try to fit in exercise when I can, though I have noticed lately that any time I try to do so, I end up getting sick.
I think sleep deprivation for so many years paired with the daily high stress lives we live almost make exercise just one more stressor. I do like how it makes me feel, so I still try to utilize it when I can. I just have to remember to keep it gentle and not overdo (and this pretty much goes against the whole theme of my life!). Lessons on lessons on lessons. That’s the story of my life! HA! I also try to meditate as often as I can. Even if it’s right before bed or just 5 minutes during the day. This helps to keep me centred. Once or twice a year, Scott and I get away for a little while, just the two of us. We started this just a few years ago after 17 years of ZERO TRIPS FOR JUST US TWO! It has been a godsend and something we really need to do. I am grateful to finally have a team in place who can help us do just that. It has been wonderful for our marriage and our sanity!
Natalie: What are some lessons and blessings you have learnt since becoming Claire & Lola’s Mum?
I remember when I was in high school hearing about a mother who had a son that was profoundly affected and couldn’t move much except for his eyes, didn’t speak, was sort of “trapped” in his body. I remember saying, “I could never do that… how do they communicate? How does his mother know what he needs? How does she love him so deeply when she cannot really know him?” I was so fucking naive!!!!!!!!!!!!!!!!!!!!!! I wish I could find that mother now and hug her and never let go because SHE HAD IT ALL FIGURED OUT & I was CLUELESS! I love how we get to love our girls. I LOVE how they communicate with us in their own ways. There is NEVER a moment I don’t know how they feel. I know that mother was the same way with her son. I wish others could know what we know and love like we love. They would be forever changed also.
Natalie: What pearls of wisdom do you want to share most with Mum’s who are at the beginning of their special needs journey?
Gwen: To all the families out there who just had a child with special needs… YOU GOT THIS.– I hate to do this, but I could NEVER, EVER!!!!!!!!!!! put it into words better than I did in this post. Probably my FAVORITE post I have ever written. <3
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Gwen: “Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known.”~ Garrison Keillor
Natalie: Thank you Gwen for sharing your inspirational story. Lots of tears mixed with belly laughs. Your family are an absolute testament to what is possible with the power of love. Awe-inspiring on so many levels. I first discovered Gwen’s blog not long after my daughter was diagnosed with Microcephaly. What I loved most about Gwen was her authenticity, cheeky humour and incredible amount of resilience. Gwen was named one of the most inspirational people of 2016 in the Washington Post and it’s so clear to see why. Thank you Hartley Family.
“I have learned that I am way stronger than I ever thought I was. I have learned it is possible to love even deeper than I imagined. Learning to communicate on this soul level — through our eyes, hearts, sounds, feelings — it’s so amazing. It’s something I didn’t “get” prior to having our girls”. – Gwen
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